Ovarian Cancer Australia was founded by people directly affected by ovarian cancer who wanted to raise awareness of the disease and support those who had been affected.
This group included Nicole Livingstone OAM and her sister Karen Livingstone AM who lost their mother and aunt to the disease; Simon Lee, whose wife Sheila had been the first Australian ovarian cancer campaigner prior to her death in 2001; actress and comedian Lynda Gibson who was diagnosed in 2000 and subsequently lost her battle in 2004.
Ovarian Cancer Australia owes enormous gratitude to Sheila Lee – the first ovarian cancer advocate in Australia who campaigned tirelessly throughout her own illness to increase the community’s awareness of ovarian cancer. Sheila’s vision and commitment inspired the creation of our organisation.
Sheila was diagnosed with ovarian cancer in February 1999 at the age of 54 years. Like many other women then and now, Sheila’s cancer was already at an advanced stage at diagnosis.
Sheila was appalled by the lack of awareness about the disease in the community, at the very poor outcomes experienced by women, by the lack of profile compared with other cancers and by the lack of research focussed on reducing the impact of ovarian cancer.
Sheila and her husband Simon Lee started speaking out – Sheila spoke about her experience, they developed the OvCa ovarian cancer awareness website which provided information about the disease and its symptoms, and put in place a plan of action for Australia’s first ovarian cancer rally.
This rally was held in the Fitzroy Gardens in Melbourne on a sunny Sunday in February 2000. At the rally Sheila shared some important messages:
She talked about ovarian cancer having been described as a ‘silent killer’:
Silent because the symptoms ‘whisper’ – they are often vague
Silent because women affected are often debilitated by the disease and its treatments and it can be challenging finding people with the energy or who are well enough to speak out
Silent because there was little to offer in the way of hope at that time.
Sheila talked of making ovarian cancer ‘silent no more’ – of bringing the facts about ovarian cancer to the public’s attention, raising awareness, promoting vital research and solutions for women so that Sheila’s life and the lives of thousands of other women would not be in vain.
She talked of ovarian cancer researchers at the time working with small amounts of funding on small projects in isolation.
She talked of harnessing significant funding to draw together the best and the brightest scientists to make real progress through collaborative research.
She talked of the importance of symptom awareness that was our best bet in terms of early detection in the absence of a screening test.
She spoke with hope of the awareness movement and that women armed with knowledge of the symptoms would listen to their bodies, take action if concerned and that for some of those women, it would make a difference to their lives.
Sheila spoke about symptom awareness as holding the key to hundreds of lives and research as holding the key to thousands.
The rally, as well as speaking engagements, fundraising events and media coverage formed the seminal components of a national ovarian cancer movement.
Sheila died peacefully at home in November 2000, and Simon was her primary carer for four months until her death. In a newspaper article published the day after Sheila died, her legacy, and Simon’s work, was laid out: “Her husband…is now custodian of her vision that everything possible be done to translate her death into effective cancer awareness and research”.
Simon promised Sheila that he would continue the journey they had embarked on together through the establishment of a foundation to continue her work. Along with four of Sheila’s friends and collaborators – Karen and Nicole Livingstone, Denise Hynes and comedian Lynda Gibson – Simon founded OvCa in 2001. The organisation became Ovarian Cancer Australia in 2008.